Cardiac arrest and sudden cardiac death registries: a systematic review of global coverage

Cardiac arrest and sudden cardiac death registries: a systematic review of global coverage.

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Item Type: Review
Status: Published
Official URL: https://doi.org/10.1136/openhrt-2019-001195
Journal or Publication Title: Open Heart
Volume: 7
Number: 1
Page Range: e001195
Date: 2020
Divisions: Molecular Cardiology
Depositing User: General Admin
Identification Number: 10.1136/openhrt-2019-001195
ISSN: 2053-3624
Date Deposited: 22 Dec 2020 03:26
Abstract:

Background Sudden cardiac death (SCD) is a major global health problem, accounting for up to 20% of deaths in Western societies. Clinical quality registries have been shown in a range of disease conditions to improve clinical management, reduce variation in care and improve outcomes.

Aim To identify existing cardiac arrest (CA) and SCD registries, characterising global coverage and methods of data capture and validation.

Methods Biomedical and public search engines were searched with the terms ‘registry cardio*’; ‘sudden cardiac death registry’ and ‘cardiac arrest registry’. Registries were categorised as either CA, SCD registries or ‘other’ according to prespecified criteria. SCD registry coordinators were contacted for contemporaneous data regarding registry details.

Results Our search strategy identified 49 CA registries, 15 SCD registries and 9 other registries (ie, epistries). Population coverage of contemporary CA and SCD registries is highly variable with registries densely concentrated in North America and Western Europe. Existing SCD registries (n=15) cover a variety of age ranges and subpopulations, with some enrolling surviving patients (n=8) and family members (n=5). Genetic data are collected by nine registries, with the majority of these (n=7) offering indefinite storage in a biorepository.

Conclusions Many CA registries exist globally, although with inequitable population coverage. Comprehensive multisource surveillance SCD registries are fewer in number and more challenging to design and maintain. Challenges identified include maximising case identification and case verification.

Trial registration number CRD42019118910.

Creators:
Creators
Email
Paratz, Elizabeth Davida
UNSPECIFIED
Rowsell, Luke
UNSPECIFIED
Zentner, Dominica
UNSPECIFIED
Parsons, Sarah
UNSPECIFIED
Morgan, Natalie
UNSPECIFIED
Thompson, Tina
UNSPECIFIED
James, Paul
UNSPECIFIED
Pflaumer, Andreas
UNSPECIFIED
Semsarian, Christopher
UNSPECIFIED
Smith, Karen
UNSPECIFIED
Stub, Dion
UNSPECIFIED
La Gerche, Andre
UNSPECIFIED
Last Modified: 05 Jan 2021 21:56
URI: https://eprints.centenary.org.au/id/eprint/891

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